Calling all triple negative breast cancer patients in the UK
Comments
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Hello linali (Lindsay),
Thank you for your information about the New Scientist.
I do hope your sister will be able to go on her Northern Lights cruise. These cruises are becoming a way of life for a lot of people. One of my cousins and his wife have left this morning on a three weeks holiday. They are flying to Hong Kong, via Singapore, and then they are going on a cruise through China. People seem to be going so far away these days. I cannot believe the size of some of these cruise ships.
I do hope all will go well at your meditation later on and we shall all be interested in any information from a person specialising in TNBC. I have read about the similarities between TNBC and prostate cancer. We have to remember that cancer is a systemic disease throughout the body and that, for the moment, the diseases are being named according to the location in the body where the cancerous cells choose to settle and grow into a tumour. That is how I have understood it from my reading.
I was glad to know that all went well with your MRI scan. I cannot believe how long you would have had to wait in the public system. I am not sure how long you have to wait in the UK, especially if you are not actually in hospital. I know there is always waiting here unless it is an emergency. It used to be very long waiting times for most things, but that has improved a lot.
I hope all goes well for Leigh.
I hope you have a very good St Patrick's day on Sunday. We have to get as much out of life as possible.
I shall answer your PM later today.
Best wishes.
Sylvia xxxx
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Hello Liv and Carolben,
We are concerned about you and would love you to pop in and let us know how you are.
Thinking of you both.
Love.
Sylvia xxxx
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Hello everyone,
Here are some snippets of information that I have picked up this week from various sources.
Apparently, our cholesterol is higher in winter than in summer. What we eat has very little bearing on our cholesterol level. Our cholesterol level goes up as we age. In a French magazine I read about the dangers of statins, that has been very much in the news here.
Talking to a friend of mine, as we packed up a load of clothes for Cancer Research UK, she told me she was worried about her high blood pressure. She also told me a nurse had told her that your blood pressure goes up more in winter. Perhaps this is because blood vessels are constricted in cold weather.
I have just read about the benefits of bitter melon juice in preventing pancreatic, and possibly breast, cancer. Have any of you heard of bitter melon juice?
I have just received my latest e-mail from Cancer Active. There is a lot of new information on it that I need to read more carefully. For those of you who have signed up for the free e-mail, I would welcome any comments about the contents.
I do hope the week has not been too stressful for those of you posting and those viewing. For anyone newly diagnosed and needing some help, comfort and encouragement, please come aboard and join our group.
Best wishes to everyone. Start winding down tomorrow, Friday.
Sylvia.
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hello everyone, just been catching up on all the posts, I've been up visiting family, which was lovely, but very tiring. The biggest side effect of the Taxol for me is the fatigue - got in the pool and just could not swim more than 200 meters, and that really did me in. So very gentle yoga is the order of the day for me at the moment.
I have the next chemo tomorrow, it was so good to have a week off with no chemo! 2 more sessions and then it's game reserve time. Hope I'm not going to struggle, tho I won't be flying alone, which I found just exhausting. My sister from California will be arriving here on Monday and she'll fly up with me, then I'll fly home again with my son. Can't tell you how excited I am to be seeing him soon.
Adagio they gave me aqueous cream pre-mixed with cortisone cream, which is all I used during radiation. I did shower in just warm water, but didn't use soap, and patted dry very carefully. I didn't burn until towards the end, but not badly. At the end of rads they told me to continue using the aqueous/cortisone mix for 2 weeks, then I could use other creams. I used a Kigelia gel, (which I'm not sure is made anywhere but here in South Africa) - it's absolutely brilliant - check it out on www.theoliveworkshop.co.za I tried aloe vera gel (99% aloe vera) but found it a bit drying. My skin went back to normal pretty quickly. Good luck with the rads - after chemo it's so much easier!
My hair has started to fall out and I'm not happy about that! I knew it would happen, but I so don't want to be bald again. I know I have bigger things to worry about - what's hair? It'll grow back, but I have so loved my new curly, thick hair (it was also very straight and fine). It's kinda like no one sees the sores in your mouth or the headaches or the nausea or the fatigue, but your hair is so right out there. Dammit!! I was looking at pics of when I was bald and I look just like my 91 year old Dad. With this new hair I look like my Mom. I much prefer looking like my Mom!!! Oh well, I'll get over it.
Been a bit down because of the fatigue mainly, I always get tearful when I'm over tired, also not able to put any weight on, even tho I'm eating more than I normally do and do 2 Ensure shakes a day on top of meals.
Michael, I'm also getting the steriod high - not much sleep for the first 2 days, and a total motor mouth, like you said. I just buzz and get very busy, but if I make myself lay down and have a rest in the afternoons that does help to kind of break the mania. I'm still learning how to handle it.
Liv, have everything crossed that your scans and everything will be ok. Hang in there, I know every new test and check up is nerve wracking, thinking of you!
Love and healing light to all
Nice to be back,
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A city slicker moves to the country and decides he's going to take up farming.
He heads to the local livestock supplier and tells the man, "Give me 100 baby chickens."
The supplier complies.
A week later the man returns and says, "Give me 200 baby chickens."
The man at the supplier complies. Again, a week later the man returns.
This time he says, "Give me 500 baby chickens."
"Wow!" the supplier replies. "You must really be doing well!"
"Naw," said the man with a sigh. "I'm either planting them too deep or too far apart!"0 -
Hello Carolben,
I am sure we are all glad to see your post and to know you have been away on a break.
I think fatigue is the most common and most enduring with chemotherapy. Just take it easy.
I hope all goes well with the chemotherapy and then just two more and it will be all behind you. I do hope you have a lovely time when your sister from California arrives and that you spend good quality time with your son.
We are all thinking of you and wishing you well.
Warm thoughts.
Sylvia xxxx
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Hello BernieEllen,
Thank you for giving us all at least one laugh today. You brighten everyone's day.
I do hope you have a good weekend.
Wishing you well.
Sylvia xxxx
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Hello to Sylvia (you are so kind and caring!) and all,
A beautiful cold-but-sunny day here in Germany! Really lifts the spirits to see that blue sky!
Here's my latest news (have been hanging out over at the radiation therapy forum lately, where Adagio saw one of my posts/rants
): I went up to the hospital yesterday, expecting to start on the radiation simulation. No, just a chat with the RO. She took a lot of time explaining how it all works, what will be radiated, skin care etc. As I've been hearing since the surgery from docs, nurses, former patients, German bc forums: no washing the Bad Girl or even getting her wet (!!), no creams, just powder. Washing the underarm is allowed, and even deodorant, hallelujah!! I asked her why the difference between this skin care protocol and how it's done in other countries, and if she had studies comparing the outcomes. "Oh ja, es gibt Studien..." but she didn't offer to send me links to those studies---hmmm. Still waiting to be convinced!! She admitted that "this is an old-fashioned approach, but we are confident with our results". We shall see, and I WANT to believe, but it makes me extra-nervous when the "standard of care" is so different from most other countries.
I suspect it's really because they don't want their markings to be washed off---if you use creams, you have to wash them off before the next session. I asked her if they use tattoos and she said they used to, but not anymore.
Very interesting to hear everyone else's experiences from all over the world!
The first actual rads session is next Thursday, March 21---six weeks since surgery. Another six weeks and it will be all over but the mopping up
. No chemo, no pills---must count my many blessings!!Hugs! Cynthie
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Sylvia,
I'm sorry to hear about your Uncle's passing. May you have a lot of cherished and beautiful memories to remember.
I'm home from surgery - it was outpatient on Wed. Recovery is more painful than when I went from expanders to implants last May, must be due to the fact that implants have been in me longer. PS was also going to remove a lot of scar tissue that I could feel, but not see.
Good news, that one area, that I was concerned about, where I had the mammo/us and MRI showed as non-malignant, he did remove the enitre tissue. He told my husband after the surgery that it looked like normal tissue, but he did send it to the lab for confirmation. This is the first time I have rested truly easy since discovering that piece of scar tissue last summer.
I called in today and they said no exercise for 6 weeks. I asked about walking on the treadmill, and she said definitely nothing until next Thursday when I meet with the PS.
Is that okay for me to go over 1 week without exercise? What did you all do during these times? Were you able to walk after a few days?
I am quite loopy, as I'm on Valium/Vicodin for a few more days still, and on anti-biotics for a week. But I feel like I need a game plan.
Time for the next dosing schedule.
Talk to you all soon!
- Scar tissue after mastectomy
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Quick picture change - hair is falling out rapidly, thinning and receeding - so this is the last photo of me with hair for a while, I guess.
My onc wants me to have Avastin in conjunction with the Paclitaxel, it's such a big decision to make, not sure that the clinical trial results are conclusive and there are so many pros and cons.
Does anyone here have any more knowledge of Avastin for TNBC mets to lungs, second round of chemo?
Still feeling pretty good - chemo was easy yesterday, steroid high and headache and nausea not too bad this time.
Debra, I can't advise re excercise, tho I find most times that I need to listen to my docs! I'm having chemo now, and find that my capacity for exercise is dropping - can't swim as much or do much more than slow, restorative yoga. It's really hard cos I'm quite busy in my head and exercise helps so much with that. It's hard to try and take it easy, I make myself rest up every afternoon. I pushed myself so hard to swim my normal lengths the other day and totally exhausted myself to the point of sitting in a corner crying. Not clever. I still swim, but less lengths, floating around and 'dolphining' more. Just being in the water is therapeutic for me.
I did very little exercise with my original chemo last year - gentle walks on the beach mainly. After all tx I built up exercise capacity quite quickly, so I'm reassured that it does come back (strength, muscle etc). Although you're not having chemo now, you've been through a big operation and the body takes a beating. I guess that at times we just have to rest and let our bodies recover. Good luck!
Love the jokes, Bernie, thank you for the laughter.
Sylvia I'm sorry for your loss.
Liv, thinking of you with love.
Love and healing to all
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A man left for work one Friday afternoon. Instead of going home, he stayed out the entire weekend hunting with the boys and spending all his wages.
When he finally got home on Sunday night, he was confronted by his very angry wife.
After two hours, she stopped nagging and said: 'How would you like it if you didn't see me for two or three days?' He replied: 'That would be fine with me.' Monday went by and he didn't see his wife. Tuesday and Wednesday came and went with the same results.
Thursday, the swelling went down just enough for him to see her a little out of the corner of his left eye.
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Bernie that is so funny, I am going to remember that one!
Happy St Patrick's Day, hope you enjoy the celebrations. There are quite a few Irish expats in Hong Kong and they will be celebrating the day at the local Irish Pub, yes even in Hong Kong the day does not go unnoticed.
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Hi Sylvia and everyone,
There are so many having treatment at the moment so I do hope you are all doing ok.
InspiredByDolce great to hear you are recovering well and the scar tissue proved to be just that.
Best wishes to all and I hope you have a good weekend.
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Carolben, I love your photo and I know you will be every bit as beautiful without your hair. I haven't colored mine yet, so I have a lot of grey at 44 years old. I was planning to color in April, which would be 1 year post-chemo, but since my hair has come in crazy looking, I'm stilling wearing my wig.
Sylvia, you are so special - thanks for all you do to keep all us ladies around the world connected with great information, inspiration and positive thoughts and prayers.
I won't exercise until I see my doc as you all suggested. I felt bad today and fever went up 3 degrees. I took percoset and tylenol and it's under control again. It's only day 4 since surgery, so I imagine that is my body healing. I sat outside for a while. He mentioned there could be a depression where that tissue was removed, so I want to make sure fluid doesn't fill up there, which is why I'm being cautious.
I hope you are all doing well tonight and enjoying the evening with family, friends, tv or a good book or a cheesecake. Yum.
Take care special friends!
- post implant exchange
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InspirationByDolce, sorry to hear you are having issues but as you say it is only 4 days. I am due for exchange in May so I guess I will be having drains and healing time yet again.
I have not done too much research into the exchange yet but did initially think that it would be more simple than the Mx and TE surgery but obviously not the case. I realize you are having secondary surgery because of implant issues, just wonder how common capsular contractions are?
It is afternoon here and I am going to High Tea at the Mandarin Hotel later so I will make sure to have a cheesecake for you and will not be able to resist the scones with Mandarin special strawberry jelly and clotted cream and other delicacies ...will need to skip a few meals after that.
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Hello everyone,
I am so proud of you all keeping this thread going with all your posts.
I shall post more later on today.
Best wishes to you all. I hope you are resting today and doing what makes you happy.
Sylvia
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Just dropping in quickly to wish everyone a very happy St Patrick's Day. We went for dinner with my in-laws. I am enjoying life at the minute and almost done booking our very well deserved holiday to the South of France in June please God.
Love to you all xx
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Hello Cynthie,
Thank you for your post. I do hope all will go well when you start your radiotherapy treatment.
I think that it is a good idea for your radiotherapy oncologist to explain everything to you, so that you know exactly what to do and what not to do and that you know what to expect from your treatment. Radiotherapy can appear to be easy, especially after chemotherapy, but we have to remember that radiotherapy is just as lethal, can be very tiring and have side effects. You have to look after yourself during it.
We also have to remember that cancer treatment is very individual and your team will have worked out what is best for you. Different countries may proceed in slightly different ways as may hospitals, but ultimately the treatment is pretty standard and will be the same.
I was not told not to wash, just to use a soap that was non-metallic, or aqueous cream. I was also told not to use talcum powder or to put any kind of cream on my skin on the day of treatment.
I did not experience any kind of burning and did not have to use much in the way of moisturising cream. Aqueous cream keeps your skin moist, and in case of problems, calendula cream or aloe vera cream is very good.
I think you can get very confused if you listen to too many people. On these threads we can only relate our own experiences and offer information. We are not supposed to give advice as we are not medically qualified. Your medical team will do what they think is best for you and you should listen to them. Germany has an excellent reputation for cancer treatment.
Keep looking forward. Good luck and we shall all be thinking of you on March 21st.
Best wishes.
Sylvia xxxx
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Hello InspiredbyDolce (Debra),
Thank you for your post and for your kind words about my uncle.
You must be very glad that your surgery is over and I am sorry to hear that you are experiencing some pain. I do hope that you will make a speedy recovery. I was so glad to know that your MRI showed no malignancy. That will give you peace of mind.
Please take it easy with the exercise. Remember gently does it after surgery. If I were you I would not get hung up about exercise. Your body has been through trauma and you need time to recover.
Thinking of you and wishing you well.
Sylvia xxxx
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Hello Carolben,
Thank you for your post. I know how awful it is losing your hair but just keep remembering that it will grow back.
I know decisions about your chemotherapy treatment are difficult, but only you can make the decision about the Avastin. All our cancers and how we react to treatment are very individual, so others cannot really say what will work for you. I suppose that if your oncologist is proposing this for you, he/she must think it is of some benefit.
I was glad to know that you are still feeling pretty good after your recent chemotherapy and I hope you will continue to feel alright.
Have you been able to sign up for the Cancer Active newsletter? It is free and very informative, and gives you links to other information. I have recently read the newsletter and then clicked on other links. I read the section on paclitaxel (Taxol) and was concerned about some of the information that I read there. You might want to read it and let me know what you think. Other links that I read with interest were 'The future? Cancer Stem Cells', 'Warning Certain chemo drugs interact negatively with some foods', 'Curcumin inhibits metastases in prostate cancer' (in the article it also says curcumin also works for breast cancer), 'Is curcumin a natural cancer treatment?'.
I do agree with what you said to Debra about exercise. Going through cancer treatment, whether it is chemotherapy, radiotherapy or surgery of any kind, including re-constructive surgery, takes a huge toll on your body and you must not overdo things. I have read so many times that the best exercise is just regular gentle walking.
Wishing you all the best.
Sylvia xxxx
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Hello BernieEllen,
Thank you once again for making us all laugh and a belated Happy St Patrick's Day.
I did not get to the thread yesterday as my day did not turn out quite as I expected. I got called to the ground floor of our apartment complex where one of our residents had collapsed. We got the paramedics and ambulance in and they worked on trying to resuscitate him for fifty minutes by shocking him etc., to no avail. He was taken off to hospital and I think he must have been pronounced dead on arrival. I could not settle down after that.
I hope all is well.
Best wishes.
Sylvia xxxx
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Hello Lolalee,
Thank you for your posts and your support to others. That is very important.
I was glad to know you are still enjoying life in Hong Kong.
Have you had any news from Liv?
Best wishes.
Sylvia xxxx
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Hello again InspiredbyDolce (Debra),
Thank you for your kind words. I was glad to know that you find the thread helpful.
I was sorry to know that you had had a fever but glad that you got it under control. Please take care as it is very early days since your surgery.
You are an important contributor to the thread and I very much appreciate that.
Please have a look at the latest information on Cancer Active and tell us what you think.
Best wishes.
Sylvia xxxx
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Hello Mumtobe (Carol),
Thank you for popping in. a belated Happy St Patrick's Day.
I was so glad to know that you are enjoying life. That is the way to go and you have certainly earned it after all you have been through. I hope you will have a thoroughly good time in France I June. Where exactly are you going? I lived in Toulouse in the south west of France for two years.
Keep enjoying life.
Love.
Sylvia xxxx
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Hello everyone,
I hope this week will be a positive one for all of you. The weather continues cold in Exmouth UK but at least we are getting a bit of sunshine.
Special hellos to linali (Lindsay). I hope this will be a relaxed and happy week for you. Have you got that chocolate egg for Oskar?
Michael. I hope you are as well as can be expected. Do you have any special plans for Easter?
sam52. I hope all is well. It will soon be the Easter break.
liv. I am really concerned that we have not heard from you and I hope all is well. If you need to, please PM me.
FernMF, PeggySull, pacid44, way over the pond, best wishes to you.
Adagio. I hope life is treating you well in Vancouver, Canada.
To everyone, if you have any information about TNBC or just want some company and comfort, please do not be shy about posting.
Best wishes.
Sylvia
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Hi Everyone,
I know we are all aware of the importance of TNBC and exercising.
How long did you all wait to resume walking or treadmill or exercising while recovering from surgery?
I had my exchange surgery on Wednesday and the lady at the PS office said no exercise for 6 weeks. That seems a little long! What did you all do?
Up until last Tuesday my normal regime is 12 miles a day for 6 days and then on 7th day half the mileage. I would like to be able to at least walk around for an hour outside or even at a 2.0 speed on the treadmill.
Please let me know what you all did. I do see my PS for my first post-op this Thursday. I really like him and can't wait to see what he has to say!
Thank you all so much for your advice and tips!
Sylvia, how I do I get the Cancer Active articles? You posted them on here over the weekend?
- Exercise post-surgery
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After my BMX with expanders, my PS said only slow walking for six weeks after surgery. After that, vigorous exercise, including running, would be ok. I am one week out from that. I haven't had a true workout since last August, given my troubles with chemo and then normal recovery from surgery. I am really looking forward to it.
Radiation mapping is tomorrow and then start ASAP. I have lost 10 lb., though, from healthy eating.0 -
I read the posts you had about the steroids! I never knew that in relation to brain edema. That sounds serious. I remember doctors telling me a long time ago, that steroids start strong, and then taper off each day a smaller dosage to get the patient off of them quicker and without addition.
I found the thing about sweets interesting too. I wonder if they gave my steroids last week. Ever since my surgery last Wednesday, I've wanted nothing to do with veggies or my morning kale/blueberry drink. LOL I've been taking both, but very begrudingly. I've lived off of a Costco pumpkin pie and chicken fajitas the past several days. I've also gained about 5 pounds I think. I'm losing the extra 1400 calories that I got to spend when I was working out. Without those extra calories burned, and I'm still eating the same amount of stuff, I'm already up on my weight, I can tell!
I will catch up on all my reading this week, as I recover.
- For me, it's Plan B (as follows): Low-fat, low sugar, fish, veggies, whole grains, fruits, water, green tea; 8 hours vigorous exercise weekly; and Metformin. If you would like info about Metformin to discuss with your Onc, please PM me.
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Hello InspiredbyDolce (Debra),
Thank you for your post. I hope you get some answers about exercising from some of the people on the thread.
If you go to the Cancer Active site, http://www.canceractive.com/ , and sign up for their e-mail it will then be sent to your inbox. Once you have it you will be able to click on the various links relating to the content of the e-mail.
Good luck.
Best wishes.
Sylvia xxxx
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hello placid44,
I just wanted to congratulate you on your weight loss through healthy eating. That shows determination.
I hope all goes well tomorrow.
Thinking of you,
Sylvia.xxx
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